Hormone treatment or not?

Following a routine mammogram in August, I had surgery in September to remove some pre-cancerous cells that were high grade DCIS.  Nothing had spread beyond the duct that they were in and I’m very aware from reading posts here that I am extremely fortunate.  I’m 65 and otherwise in good health.

I had 5 sessions of radiotherapy in November, which was fine.

For reasons that are too complicated to go into here, the results of the biopsy taken from the cells that were removed have only just come through.  All I know at the moment is that I am ER positive.

I have an appointment with my oncologist on 13 January to discuss whether I now have hormone treatment or not.

In previous conversations the oncologist has said that statistics show that without any follow up treatment the chances of the cancer reoccurring within the next 10 years are 12%.  With radiotherapy this reduces to 5%.  With hormone treatment (he would probably prescribe Letrozole) they are 2%.  It is obvious from our discussions that the oncologist does not think a 3% reduction in the chances of reoccurrence are worth the side effects of hormone treatment which he says affect up to 50% of women taking it.  (You can see he’s a man who likes statistics!)

However at the end of the day he says it is my decision.  I’m really torn about what to do and there seems to be no obvious solution.  I also don’t know at the moment how ER+ I am, but gather from the posts here that there are gradations (is 8 the highest?) which might also influence my decision. 

If I don’t have the hormone treatment will the annual mammograms be able to catch any reoccurrence early enough?  I could also start the hormone treatment and then stop if it was too unbearable I guess.

I’d be grateful for the thoughts of any of you on this to help me think through what to do for the best.

Many thanks, Sue


Hi Sue

its a hard one…and without a crystal ball we can never know the future. 
I have had primary BC 3 times now…first time low grade DCIS 4mm ER+ 3/8 …no mention of hormone medication ever made…Was told I had a 1 to 2 % chance of recurrence…,5 years later ( my last yearly mammo) …high grade DCIS 37mm ER4/8 was found in exactly the same spot…this time I was offered Tamoxifen if I wanted but oncologist would be equally happy for me not to take…I took tamoxifen for 2 years until a 3rd BC was found in opposite breast…this time invasive 12mm with 1 lymph node involvement and 7/8 ER+… this had developed in the year from one mammo to the next…Was it a waste of time me taking tamoxifen? Or would my 3rd bC have been a worse diagnosis without? …I will never know…this time I was prescribed Letrozole for 10 years and I’m hoping this will be a better protection for me… I don’t really worry about recurrence…I worry about a secondary diagnosis…which is rarely detected by mammogram… my take is that I have to do everything I possibly can to reduce my risks ( I also have 6 monthly bone infusions) otherwise I would always be worrying that I am putting myself at risk.

But we are all very different people and our stories are all very unique and we all have different starting points.  

you are Almost 20 years older than I was at my first diagnosis…I’m 57 now.  Talk it through with your team…,but remember that stats Are not specific to you…just an indication based on your individual diagnosis …I had a 98 to 99% chance of no recurrence according to my Onc…but I then fell into the 1 to 2 % bracket.

yes I have side effects to Letrozole, But none that significantly affect my life…I hope you are able to come to a decision that is right for you. Take good care

Hi Sue

I think kitkat offers a wise perspective on this. First, yes, 8 is the highest score for each of the hormone-receptive data. Zero sounds great till you score zero across all three measures and then you’re in different territory entirely. But that’s not common.

What I would say is that, if the statistics show only a 5% improvement in your chance of no recurrence, you have to consider what that statistic means. it includes all the unlucky ones for whom there was 100% chance of recurrence and all the fortunate ones who have 0% chance of recurrence. And you’ve no idea where you fit. Kitkat has shown how misleading the data can be. I had a 75% chance of no recurrence. Guess what.

So those of us who have seen the statistics lead us to false hope are likely to say give the HT a try. You may be in the 50% who barely notice it. You can always stop it after giving it a few months’ fair trial. We ARE all different and have different priorities in life so no one can tell you what to do but, since your oncologist is so data-driven, why not ring your breast care nurse for her perspective OR ring the nurses here - they are beyond great, well-informed and reassuring!

All the best in making a big decision x

Hi Sue

I’m in the same situation- don’t know whether to go on hormone therapy I’ve been prescribed Letrozole. I’m 72 . I’ve checked out the nhspredict which indicates a 70% survival rate after 10 years with no treatment compared with 72% if I take the med. it hardly seems much difference  in view of all the side effects.
I’m due to see oncologist on 23rd April to discuss radiotherapy. I had a right mastectomy and  left lumpectomy at end of February  

I note you mention the grade of ER+ how do you find this out ?
Be interests to know what you decided